A lot of Steve’s narrative referred back to the idea of adaptation, of how he managed to get by in the world with one arm. Steve stands out from the rest of my participants due to the nature of his impairment, as all of my participants were either born impaired or acquired impairment due to spinal or brain injuries - Steve “just” lost his arm. Everyone else I spoke to had systemic impairments – that is, their impairments were not restricted to simply one organ or limb – whereas Steve’s was localised and perhaps this is why his adaptation narrative appeared as it did. Certainly, my other participants all spoke of adaptation, as it is a part of life for disabled people, yet Steve’s adaptations were ‘simpler’ as he was coping with the functional loss of a limb, rather than dealing with an
uncooperative body. This by no means diminishes Steve’s efforts; rather I draw attention to this distinction to once again return to my argument that a homogenous view of disability and disabled people does not do justice to the variety of life experiences of these individuals. However, Steve’s experiences did not occur in a cultural vacuum, and it is perhaps due to contemporary medical technology and understandings of the body that his adaptation is considered simple in comparison.
Adaptation to chronic illness and impairment can be understood as a “creative response” (Carel 2007:104) to a negative “movement between the biological and lived body” (99). Through this adaptation “a new relationship can emerge” (99), in which both practical and philosophical aspects of impairment work in tandem to produce a new understanding of the “body-subject: the body that is both a material object and the seat of subjectivity” (99). In the below examples the reader will see creative responses to impairment and the reasoning behind such responses, as well as a continuation of the matters discussed in the previous section; that is, the ways in which my participants view themselves as bodies and subjects – attempting to reconcile the two into an embodied body-subject.
Although Steve was offered a prosthetic arm, he quickly discarded it as he “found it easier to not have one and just learn to adapt”, mentioning how, with power steering, he was able to drive an automatic (transmission) car and how people he knew were able to ride a
52
motorcycle with one arm. I explained to Steve the background to my research and some of my interests, and we ended up discussing videogames, which turned out to be a fairly important part of Steve’s leisure time, he explained,
Umm, had to learn to use a Playstation with one hand, yeah. Yeah, well I got an Xbox now but you can sort of like – you just have to sit it on your leg and kind of use all your fingers. You can’t really use the thumb, it’s – you’re not as good as you could be obviously but you can still play… but yeah that, that’s probably my biggest challenge [both laugh] – trying to use the Playstation. ‘Cause they’d only recently started coming out then too, so it was – yeah. Felt like I was missing out [both laugh]
The idea of adapting to impairment to avoid “missing out” is something that is common amongst those who have recently found themselves impaired due to accident or illness, however, these adaptations are often more to do with basic functioning and social participation than leisure activities. Steve presents himself through his narratives as a laid-back man, more concerned with enjoying quality downtime than worrying about past events. This attitude could be considered an expression of idealised ‘kiwi bloke’ attitudes, and the fact that Steve considered using the Playstation his “biggest challenge” for
comedic effect supports this.
However, such a ‘minor’ adaptation was not possible for all of my participants; Paul, Jenny, and Grant had to make significant adjustments. Paul and Grant are the two participants in my study who were the most seriously affected by their impairments, at least physically. Paul, who I have already introduced, suffered from bacterial meningitis which left him deaf, blind, and paralysed; Grant’s illness was equally debilitating16. Jenny stands out from the previous two, as she acquired her impairment very early in life, and has made one incredible adaptation in particular in order to maintain her independence. She explains this adaption as she introduces herself,
My name is Jenny. I come from South Africa and I am living a home [sic] called [ALF] and in studio 21. I have Cerebral Palsy and use my feet insert [sic] of hands. I am an artist
16 I say this not to rank my participants on some sort of suffering-scale, but to acknowledge that out of all
my participants, Paul and Grant were the two whose self-reports indicate that impairment caused the greatest disturbance in their lives
53
While this brief introduction provides some insight into how Jenny perceives herself in the world, here I will be focusing on her extraordinary adaptation. Upon meeting Jenny, and reading an information sheet she had prepared earlier, I was blown away by the way she had adjusted to her impairment. When she was just two or three months old, Jenny contracted whooping cough which led to brain damage and subsequently caused CP. At the time, Jenny’s parents were advised that she “would never be able to do anything” for herself except lay on her back, but Jenny “proved the doctors wrong”. As a result of these early health complications Jenny started at a special school at just nine months old which was designed to “help [her] develop”. It was here that Jenny,
was taken to someone who also used his feet to do things. He showed me how to use my feet. I carried on with using my feet by myself getting more able all the time to do things with my feet instead of my hands.
I went to Brown’s School for 18 years. Then I went to a home called Pevensey Place. It was a home for adult with disabilities [sic] and people with cerebral palsy to live and work. I did all sorts of things like handicraft, gardening, housework, laundry and pantry
This early start, combined with a supportive environment for eighteen years, enabled Jenny to develop an effective adaptation to help manage her impairment. Furthermore, Jenny pushed beyond simply adapting to her impairment, and got heavily involved in sport shortly after arriving at Pevensey Place;
I became involved in South Africa Sports for the disabled in 1985. I joined the Natal Team in 1986 and won two gold medals. In 1988 I became a Springbok and won three gold medals. In 1997 I won gold medals and three trophies. I have now 22 gold medals and I enjoyed my sports very much. I travelled around South Africa and saw many places. I retired because of the changes and have carried on with my life
Despite these early positive experiences, Jenny’s adaptation serves to make her incredibly noticeable in social situations, putting her in an unenviable situation. Jenny explains,
the physically environment has it’s challenges [sic] especially because I use my feet for everything. For examples, I avoid doing my shopping without a staff member as I would need to use my feet to get things off the shelf and I know this is not a social norm. In situations like that I worry a little about what people think
54
Public outings become stressful for Jenny as she is acutely aware of how she is perceived by others in a social setting. For Jenny, there is little room to exercise full agency; she either takes advantage of her learned adaptations and risks making herself highly visible and open to scrutiny, or she is accompanied by a carer which reinforces the perception of Jenny as dependent. It is clear that in Jenny’s case adaptation to impairment is not
enough to overcome disability, and that allowances need to be made to enable disabled people to exercise full agency.
Furthermore, these outings reflect my other participants’ experiences with public interaction and are well documented in the social science literature on personhood and stigma. When talking of personhood, I mean the negotiation of my participants’ status as persons; ‘persons’ in this sense are not to be confused with ‘humans’ – as individual biological organisms – but rather the term refers to a cultural category of things17 (Morris 1994) that are assigned social significance (La Fontaine 1985). I will discuss the concept of personhood in more depth in the following chapter, but as this is an important thread that runs throughout my thesis it has been briefly introduced here.
Arguably, in the West, in order to be considered a “full person” (Luborsky 1994:239) one must be able to “fully perform normatively valued activities and roles” (239). In the West, such activities and roles are often “systematically reinforced by portrayals in the media and through selection in the social, economic, and political dimensions of life” (Ablon 2002:S3) and are linked with personal traits such as “individualism, good physical health, external beauty, vocational accomplishments, and athletic achievements” (S3) – most of which are difficult at best for physically disabled people.
For Jenny, physical adaptation is confined by existing social structures; despite having learned an excellent adjustment to disability Jenny is incapable of using it in a public setting as it draws attention to her differences and contributes to her feelings of
stigmatisation. For others, adaptation occurs in private where social structures have less of an impact, although social ideas of desired traits still factor in to these adaptations.
17 Morris (1994) chooses to use ‘things’ to make the point that, in certain cultures, animals and (what we
consider to be) inanimate objects can be considered persons. However, in a contemporary Western context the category of person is usually reserved for human individuals.
55
Below I will briefly discuss some of the personal and introspective adaptations that my participants have made.
While Jenny’s adjustments are predominantly physical, and Grant’s are more attitudinal (as I will discuss shortly), Paul’s adjustments are both physical and mental, and both centre on technology. Very early on Paul identified learning Braille as a necessary first step on his road to recovery, and so he,
propped myself up in bed and started learning the basics of Braille, right in those early days, within about three months of – yeah, entering the rehabilitation centre. So that’s six years ago, and now I’m working with the technology I’ve got and working with it has changed my life massively, hugely, yeah
For Paul, learning Braille was necessary for communication purposes, and it enabled him to access certain technologies which themselves served as gateways to greater
participation. Learning Braille and subsequently being able to use specialist Braille keyboard technology, Paul is able to “connect in so many ways now with the world” and this ‘connection’ is vitally important. Paul has also had to learn to adapt to life in a wheelchair, with all of the problems that come with it, although he is making steady progress toward “exiting [his] chair”.
Paul structures his illness and recovery narrative by framing it as a “journey” and this concept has allowed Paul to make some attitudinal adjustments, as he explains,
I’ve learnt as I’ve gone on that – not to get annoyed at people because they may have feelings or they may treat you in a certain way, or have thoughts towards you in a certain way. Sadly it’s just where they’re at on their journey – everybody’s at a different level on their journeys and they've got learning to do
Paul’s Zen-like calm is a testament to his perseverance, and his ability to accept his impairment, adapting to his “new life”. Paul’s narrative focuses on the positive changes that his impairment has brought about, and he explores these by recounting the journey so far;
Yeah, this journey has definitely changed me. I was a very confident, very strong person in my old life, and knew what I was doing – wouldn’t tolerate anybody messing me ‘round… I
56 wasn’t a very patient person in my old life, uh, anybody who, yeah, messed me around – I’d get pretty annoyed and pretty irritated and I’d flick them I suppose, and go elsewhere for whatever I needed… I’ve lived in an incredibly frustrating world for a long, long time. Incredible – used to make my blood boil because I came from a world where I could have anything I wanted pretty much instantly… I could do anything I wanted to; I was a free person… Uh, but when I entered this world – nah - you know? In the early days everything had to be done for me. Yeah, I couldn’t care for myself, I had to be helped with everything until I’ve got to the point now where I can care for myself… but that’s taken a long time to get to where I have, and I’ve had to learn so much patience – but patience doesn’t come very easily [laughs]. If you’d seen me in my early days, I used to just wind myself like a tightly coiled spring ready to unfurl – and be careful if you got in my way man, ‘cause I’d knock you into outer space, yeah. I just about knocked myself into outer space a few times…
So, I put patience right at the top of my list, yeah.
Like Paul, Grant’s adjustments also primarily focused inward, emphasising internal adaptation rather than physical; an emphasis which is more noticeable in Grant’s case. In 2011, after experiencing “the whole damn pre-stroke shebang” and being told he was at risk of a “major cardio event”, Grant suffered a catastrophic brainstem stroke; against all odds (and despite some medical missteps) Grant survived. Although Grant defied some tall odds, his survival came with a significant cost – he narrowly avoided locked-in syndrome18, but was left with very little voluntary movement, an inability to regulate body temperature, and significant issues with verbalisation, among other things. Grant’s adaptation was limited due to the level of his impairment, and although rehabilitation proved very successful, Grant’s adaptations were more mental than
physical. Physically, the biggest trial for Grant in the early-to-middle stages of his recovery was to regain the ability to use computer technology (and navigate his way around it with one, non-dominant hand) as it played a vital role in his life. However, mental adaptation
18 This is a somewhat common condition among survivors of brainstem strokes, wherein an individual is left
with negligible voluntary movement, often only able to move their eyelids – despite being lucid and cognitively sound.
57
was equally important, Grant explains that the transition from pre-stroke to post-stroke was the,
Hardest thing I’ve had to do. From impulsive money making go getter to an invalid on benefits needing assistance with everything. Having to learn patience, having to rely on others, often with inferior intellect when I can’t ‘talk’ them through it is uber-frustrating
Coming to terms with post-stroke life was essential for Grant; the biggest issue was learning to be patient with himself and others, accepting his level of impairment but not being confined by it. Both Grant and Paul’s narratives spoke of the end of an “old life” and a new beginning, and although both suffered the loss of their ‘go-getting’ businessman selves, they accept this loss as it brought about more important personal gains. Both men commented on how they are far more patient and tolerant post-illness, with Grant attributing his newfound cultural awareness to his post-stroke recovery.
Grant acknowledges that the support of his family, care staff and his eleven years in the army have “given [him] the goods to survive and manage this condition”. Grant’s
gathering of “goods” to help manage his condition, and his life, is reflected by many of my participants who state that living with impairment has caused them to develop or
strengthen certain positive personality traits – some of which may be seen to be lacking in non-disabled people.